Wait to start Methotrexate

[GenesisRevelation]

I was just diagnosed and was supposed to start the Methotrexate.

Because of COV 19 I am thinking of waiting to start it

I know you’re not all doctors but what’s your opinion?

[Hidden]

I know being diagnosed and having to start this medications that come with all these POTENTIAL side effects is scary then you throw C19 into the mix sends anxiety and doubts to another level. The advice from NARS is do not stop taking your meds. A flare or active disease makes your immune system even more comprised . If it was me I would take it. I’ve had RD 4 years now and although I certainly don’t know everything about this disease I do know I’m better off on these meds. Welcome to this forum you will get so much support from this lovely bunch.

[AgedCrone]

If your rheumatologist prescribed it, he must thinks it’s safe take it now.

If it suits you it’s the best thing since sliced bread!

If I were you I’d start taking it.

[Hidden in reply to AgedCrone]

You are right, Aged Crone. Our specialists will weigh up the risks. We should trust their knowledge. What else can we trust?

[Hidden]

The quicker you start the quicker you will start seeing the results (well 16weeks) and COVID not going anywhere fast so start of I were you.

[helixhelix]

I have been on MTX for around 10 years. I have not really had a significant cold, cough or other infection in all that time. Instead it improved my RA hugely and helped get me into remission. I am carrying on taking all my drugs as I believe that the advice to keep taking them is right.

If you are particularly fragile, ie over 70 with other heart or lung diseases, the talk to your rheumy team about your risks.

[Hidden in reply to helixhelix]

Excellent advice!

[lilyak]

With the way this virus is spreading, there isn't much harm in waiting a month and seeing how things progress. Of course it depends on a lot of factors, your personal situation.

Right now, not on meds, your risk form COVID-19 is low. If you start taking mtx, you increase your risk.

Are you able to isolate yourself from other people? If you work with others, and are potentially going to be exposed, then I would wait.

It also depends on how severe your disease and your symptoms are. If your disease is severe, then there is a greater argument for starting mtx. But if you're coping, you're unlikely to be harmed by waiting a month.

It is a very personal decision, but I personally would not be doing anything to increase my risk, given that the predictions are that most people will contract this virus. Look at what the medical experts are saying.

And the medications are bigger risk than the disease itself when it comes to covid-19. The advice may be to continue medications *in general* but everyone's situation is different. You haven't even started yet. Also, if taking these medications is going to cause anxiety, also not worth it. Only you know the answers to these questions (also do you have any comorbities? Heart disease? Lung disease? Diabetes? What age group are you in? ) Weigh it all up and decide whats best for you. Stay safe.

Best,

Lily

[Cheylann in reply to lilyak]

I don't think there is any evidence that people on methotrexate are at more risk than others. If that were proven it would have been on the "at risk" group.

[Maverick2 in reply to Cheylann]

By science, there is ample evidence to indicate the RA drugs increase the risk of infection. by logic, they will also increase the risk covid-19. The people who have to prove are those who suggest the continuation of these drugs, not who advocate for the safety-first approach. prove first there is no increased risk of covid-19 for RA drug users.

Doing the same thing, again and again is easy, and people are resistant to change, but sometimes you got to change according to the situation.

Insanity: doing same thing again and again and expecting a different result

Albert Einstien

[Hidden in reply to Maverick2]

Your reply only mentions "RA drugs" and so would include biologics, which HAVE been shown to increase the risk of infections. However, GenesisRevelation asked specifically about starting methotrexate, which at the doses given for RA has NOT been shown to increase susceptibility to infection. You may have caused unnecessary anxiety by lumping all RA drugs together as if their risks are the same.

[Maverick2 in reply to Hidden]

All RA drug work by the same mechanism, immunosuppression. Only pathways are different so does the RA response. TNF- alpha and IL-6 are powerful immunosuppressive thus have very good treatment response so does the risk of infection whereas methotrexate RA response is weak due to low immunosuppression less than biologics.

methotrexate indeed increases the risk of infection but not to the same level of Anti TNF and anti IL-6.

Try to understand the mechanism, you can look beyond studies which rely on drug company funding.

My aim is to provide sufficient information so as to enable them make an informed choice.

[Hidden in reply to Maverick2]

No recent studies have shown an increased risk of serious infections caused by MTX. There is a small increased risk of fairly trivial infections - and personally I'd risk a couple of extra colds per year in return for getting rid of the excruciating pain and disablement of RA. Wouldn't you? Untreated RA also makes people more susceptible to infection.

[Maverick2 in reply to Hidden]

Its for the patient to make a informed choice, the patient not even started the DMARDs. COVID-19 is not another flu, it already claimed 10 thousand lives in three months. people are self quarantined to avoid infection.

if you want to be business as usual, understand the fact the world already came standstill. WE have to do our bit to reduce the transmission.

[AgedCrone in reply to Maverick2]

But it is also insane to want to go back to having the symptoms that you took a Dmard for in the first place.

Isn’t it?

[Maverick2 in reply to AgedCrone]

It is up to patient to judge the immediate threat is COVID-19 or RA. if COVID-19 pandemic over we can attain even better results with a combination of DMARDs and Biologics.

[AgedCrone in reply to Maverick2]

Think you need to really start to understand 99% of us DO NOT understand who, when & why we should/should not continue taking our drugs, but 99% of rheumatologists DO.

I’m sticking with the ...DO’s.

From everything I have read...CV19 could still be here at Christmas,

You don’t have to believe that...but do think how your RA could feel by then.

[lilyak in reply to Cheylann]

The advice is shortly going to be the same for everyone - stay at home. If you can stay at home, that's the best way to avoid infection.

Look around the world, not just at hte NHS website. You can see what has happened in Italy. The UK is on the same track. It's fine to debate meds or otherwise, but all that really matters now is self-isolation to flatten the curve.

Just stay at home. That's the advice everywhere. The UK, US, Australia, are all on the Italy track. Meds or no meds, personal choice. But stay home. Sick or not sick. Immunocompromised or not. Stay home.

[Janontheisland2019]

I am in the exact same position. Picked up my prescription 2 weeks ago and have put them on hold (not spoken to my rheumatologist incase he disagrees) but my plan is to wait a further 4 weeks and see how the pandemic is moving; and then start. My symptoms are fairly low, I don’t have any flairs, no heart or lung problems, so although I am not being irresponsible, the thought of starting methotrexate right now is simply too high risk for me personally! Good luck, stay safe.

Jan

[Cheylann in reply to Janontheisland2019]

What risk? It has not been proven.

[Brychni]

Hi GR - I had the same dilemma a couple of weeks ago only with hydroxychloroquine and after a very informative chat with the rheumatology nurse I decided to go ahead and start taking it. I also didn't feel ill 'enough' to take something that would make my migraines/cluster headaches worse and possibly make me susceptible to Covid19.

As I understand it all of the drugs on offer for inflammatory arthritis/autoimmune diseases take a while to take effect and interestingly (worryingly) in the 2 and a bit weeks since diagnosis and then starting the hydroxy, bits of me that were not painful before are now becoming a problem; the nurse did tell me, among other things, that the illness can progress very rapidly causing irreparable damage. It's not that the hydroxy isn't working, it's that it takes a while to work and I suppose in that time the illness does indeed progress.

I'm getting all over stiffness a lot more and feel fluey occasionally. I think that the hydroxy is the best I can do for myself, and exercise, plenty of fresh air and today: SUNSHINE! we are very lucky, we live in the middle of nowhere and won't bump into anyone out and about but if that were not the case I would sit next to an open window and absorb the ultraviolets! xx

[Slotsfan]

Don’t take it wait and see what happens

[Cheylann in reply to Slotsfan]

How long for? May be waiting a long time.

[Slotsfan in reply to Cheylann]

It’s just my opinion but I looked it up yesterday and it said you are a high risk on it not worth taking a risk at the minute would rather be in pain

[cass24]

I feel for you. I was in a similar position just a few weeks ago (when C19 was starting to rear its ugly head) and wondered the same. Of course, the ultimate decision is up to you but some of the factors which persuaded me to make the decision to go ahead and take it anyway included...

Your RA is not going to go away, but sadly neither is C19 (any time soon). If you're in pain and struggling now, how long are you going to wait? There is good evidence that early treatment of RA can result in a better outcome.

If your immune system is already battling RA, you are already less well-equipped to fight off C19 and it has been suggested that uncontrolled RA may actually leave you in a worse position than that of taking a relatively low dose of Mtx.

Mtx can take at least 6 - 8 weeks (or more) to have full effect so it's fairly unlikely to have a significant immediate effect on your immune system either way.

If your rheumy has suggested it, it's quite likely they have already taken all the above (and more) into consideration and decided it's still the best course of action in your circumstances... though obviously it's still entirely up to you to make the final decision.

Good luck whatever you decide... it's a hard enough decision to take at any time and now even more so. You are not alone.

xx

[Nuttyshirlz]

I’ve still took mine being on mine nearly four years and Im getting on as normal. Only difference is I’m staying home with self isolate. Also My nurse would have rung me if she thought it wasn’t safe to take at present. This disease ain’t going anywhere for at least a year. So you need to discuss it with your nurse. I fired loads of questions at mine before I took it. Also when my My doc rang me other day she said anyone who gets requested to have the flu jab every year is cast as vulnerable group. 🙂

[lKeith]

GenesisRevelation

Hi, Get started, it's a vicious drug but it does land help to a number of ailments.

Keep as fit as you can and eat plenty of vit C from fruit & veg.

IKeith

[Maverick2]

Methotrexate increases the risk of severity of infection as it is immunosuppressive. you can delay the RA drugs till the end of the COVID 19 pandemic. Doctors hear more from drug reps than patients. its yours discretion where you want to hear from.

[Hidden in reply to Maverick2]

Methotrexate in the doses given to cancer patients would certainly make people very prone to infection, but in the very much lower doses given to RA patients there is no up-to-date evidence that it does.

[Esmereld]

Wow. A lot of very good points noted. I think you are right to pose the question. Depends doesn’t it on so many things. Maybe other health problems e.t.c. I would talk to your rheumatology nurse if I were you. These people that have responded have a lot of experience and are very well placed to advise. Your rheumy team know you personally. You can gather the advice you have here and talk to your nurse. Then you have to make up your own mind. I’ve been told I’m vulnerable because my immune system is compromised.

As it happens, I’ve had all sorts going on lately and haven’t taken Benepali or methotrexate for four weeks now. I was given the go ahead to start up again a week ago. I’m taking 2 mg prednisolone and am fine at the moment. Seems I’m having a spell of remission. I’m in two minds whether to start again or wait. More questions then arise. How long?. Drugs take time to kick in. Will it be worth it?. I have to make my own decisions but as my rheumatologist tells me “do as you think fit, you’re a veteran now”.

Everyone is different. Some of us lot have quite nasty debilitating illness. Others are well controlled and live fairly normal lives.

A working, non cloudy crystal ball would be handy.

Wish you the best of luck.

[BonnieG123]

Because it lowers our resistance, I would consider waiting a bit to start to see where this virus is going. I’m supposed to start something new in April and I’m feeling the same as you. May we all make the right decisions.

[mille]

I was prescribed methotrexate many years ago and was on it for many years and to be honest it didn't help me too much. I know we are all different and it has helped many people and helped prevent joint damage. Do you take any other disease modifying drugs? I can understand your worry as it can increase your risk of infection although I didn't have any infections while on it. If it were me and I wasn't in too much pain then I would be tempted to delay it a bit but that is just my opinion and perhaps you would be best asking your Rheumatologist about this,

[LauraJM]

I agree with J1707. I've been on Methotrexate for two years now and have been quite well. Before I started it I was quite poorly. I think I would stand a much better chance of fighting Covid-19 now that in the poorly state I was in just before I started it when quite frankly I couldn't have even fought my way out of a paper bag. In the two years I've been on it I've had no more colds or infections than I had previously and I have read somewhere that Methotrexate suppression usually means that you're likely to get half a cold per year than the average person, so I don't think it suppresses the immune system that much.

[GenesisRevelation]

I am perfectly healthy. I thought I had a bunion and bad shoes. That's when I found out from an MRI and blood test that it was R.A. So I have no other issues to worry about as far as infection. My Rheumatologist is saying there is not enough evidence to know how Covid-19 will effect people on Methotrexate. She is going to continue to do as she did before Covid-19 and that includes giving Methotrexate to new patients and keeping current patients on it.